Journey Through Dementia

Journey Through Dementia

Thursday, June 30, 2016

False Alarm

This was The Big Day.  And it all went perfectly.  Until it didn't.

I had made an appointment for her to have her stitches removed, as ordered by the doctor in the ER, with one of the nurses here in Davis.  I made the appointment for 11:30, knowing how late she sleeps these days.

Allowing plenty of time,  got to Atria at 10:00 and let myself into her apartment and yes, she was sleeping.  I woke her up and she was very groggy, but she got dressed and I went out to get her some coffee, which helped wake her up a bit more.  I could tell from how she was looking around the room that she didn't have a clue where she was.

This was one of her off days, and being awakened early didn't help that.  I think one of the most frustrating things for me...and definitely for that she wakes up not knowing where she is and what she should be doing, but knowing that she should be doing something.  

Some days this isn't a big deal, other days it borders on anxiety about not being able to remember what she is supposed to do.  I have tried giving her something simple to do, but she doesn't want to do anything I suggest and just stares at me what that little kid standing defiantly in front of Mommy and refusing to do whatever it is that she is asked to do.

I brought her the piece that her sister Barb had written when she first realized she was losing her memory.  I wasn't sure my mother could follow it, but thought she would try, because it was something from one of her sisters to whom she was the closest.  She held it and looked off and said "You know...I can't remember Barb.  I don't remember who she is."  I told her that she was her sister and she asked if she died or not.

Today she was just very vague and following me around when we left the building.  I told her many times on the ride to Kaiser where we were going and why we were going there.  Sometimes she remembers something vague about an accident, but most times it's a new piece of information every time.

I was proud of myself that I actually got to Kaiser five minutes early.  Given that I had to wake her up, that I had to allow time for her to have coffee, that I had to convince her to put on her shoes, and that she didn't know where we were going or why, I was thrilled to discover we were on time.

We went into the procedure room and a nurse asked her name.  She could remember her first name, but not her last.  The nurse checked the bridge of her nose (I had to remind my mother why she was doing this--that she'd had a fall).  She said there was something covering the stitches, something that seemed almost metallic.  She thought maybe makeup, but I don't think my mother has any makeup, and if she does, she hasn't used it in a very long time. Neither of us could figure out what it was.  Whatever it was it seemed to be caked on her nose and she put a wet gauze on it to see if she could soften the...whatever it was...up enough that she could clean the wound.

The nurse went off to find her doctor to check the stitches and I swear, this woman has been my doctor too for many years and I've always considered her more of a statistician than a physician, since she seems more concerned with numbers (blood pressure, blood sugar, etc.) than actual health. She doesn't really "know" me at all. She walked in, said hello, didn't examine my mother's stitches at all. didn't seem to know why she was there, and walked out again,  Soon, the nurse was back with her and this time she did, under the nurse's request, check the stitches and decided that they weren't ready to come out yet, and that we should return on Friday.  So we have to do the whole thing over again.

As we walked out, I held her arm because she said that she felt her legs might buckle under her at any minute.

I knew she had not had anything to eat yet, so I took her to IHOP, which is next door to Kaiser, for breakfast. and was pleased that she actually ate at least half of her pancakes, which was more than I could eat.

She does not "wait" well.  I've noticed that whenver we aren't actively doing something, but are merely waiting--like for a waiter to take our order, or for the food to come or, in a restaurant, for the bill to arrive, she always wants to know what we are doing and what we should be doing.

We left and drove back to Atria.  When we got out of the car she stood in the middle of the parking lot while I locked the car, as if she didn't have a clue where to go.  She asked where we were going and I said we were going inside the building "This is where you live," I said.  "I do?" she asked.

When we got inside she said she thought it looked familiar.  We went to her apartment and I gathered up her laundry to bring home to wash.  Some of it was in the hamper, some of it was in the waste basket.  When I had it all collected I went to tell her goodbye.  She was sitting on the couch looking lost.  She said "so I'm supposed to sit here and someone will tell me what to do, right?"  I told her what she was supposed to do was to lie down and take a nap, but that brought the defiant "I don't have to do that if I don't want to" face and I kissed her goodbye.  As I left, she was sitting there, looking around the room and, I'm fairly certain, trying to figure out where she was and I know she was trying to figure out what she was supposed to be doing.

I felt so very helpless.

Tuesday, June 28, 2016


It was a shock to walk into Atria at 1:30 and find my mother coming back from lunch!  She couldn't remember if she had had lunch or not, but she had coffee breath, so I assume she did.  But she was out in public!  It may be that she was just feeling better and not remembering what she looked like, just went to lunch as she always does.

But I can tell she's feeling better because most of our repeated conversatiaon today was about how she's getting old, how it would be neat to be 100 and what am I doing exciting tonight.  Right back where we began before the accident.

Her finger still hurts, but it used to be 4 fingers that were excruciatingly painful, now one finger hurts a little bit.

The purple around her eyes is turning yellow so she is on the mend and won't be technicolor any more, though it still shocks her to get a glimpse of herself,  But in some corner of that demented mind she finally knows that there was something about an accident, but she isn't clear on the details.  Still just her knowing that "accident" was somehow involved is a huge step forward.

Saturday, June 25, 2016

Day 3

I took the morning off from Atria because my mother's step son was stopping by to visit her, and I had my monthly lunch date with my friend Kathy.  I was on the way to the restaurant when I had a phone call from the step son letting me know that my mother seemed to have a pain in her finger and had anybody checked that?  I couldn't believe it.  I had written to him TWICE giving him a full report on the accident, including the sprained fingers.  I assured him that the doctor was aware of the problem, that she had been ex-rayed and that I had explained it to her at least 100 times.

I also had a call earlier in the day from someone at Atria.  She said "I'm here with your mother.  She's a little confused and doesn't seem to remember what happened to her."  I told her too that it had been explained to her a zillion times and would probably explain a zillion more times.

After lunch, I went to Atria.  The stepson had stayed less than an hour, according to the guest book  But at least he came which is more than anybody else in the bay area has done.  I stayed until about 5.  Her bruising is more extensive today

She took a nap, and I did too.  We sat there and stared at each other for about an hour.  Occasionally she would tell me that her fingers hurt and she didn't know why. At one point she told me that she didn't know why, but all she could think of in the back of her head was that she wanted to walk and just keep on walking forever.  I wondered if this, combined with her obsession with seeing her mother lately meant anything.

I decided to turn on the TV and tried to find something that she might be interested in enough to look.  I tried Ellen but she just turned to me and said "do you understand anything that is going on?"  I finally just turned the set off. She is beyond being able to watch TV and enjoy it.

When I left she was upset because she didn't know what she was supposed to do if I'm not there.

Friday, June 24, 2016

Day 2

I packed up and headed to Atria, where I spent the day. She actually slept until noon and when she woke up, she was brighter than she had been the day before.  She still doesn't have a clue what happened or why her fingers are so sore and I must have explained that to her 100 times. 
Her face today looks horrible, as the bruising has set in.

But actually by the time I left at 6 I could see it was looking better, though anyone seeing her for the first time would be appalled.  Other than being shocked at her appearance, she didn't seem to be too upset until we were going to the dining room for dinner and she saw herself again, for the first time in a couple of hours, and decided she didn't want anybody seeing her, which I certainly understood. (So I ordered a dinner to be brought to her room before I left to come home.)

Not only did she sleep until noon, but she also took about an hour and a half nap in the afternoon, so I got a lot of reading in and actually finished my book, "Broadway Tails: Heartfelt Stories of Rescued Dogs Who Became Showbiz Superstars" by Bill Berloni.  Fascinating story and there is even a sort of friend of mine in it -- Moose, who was the first traveling company Sandy for Annie.  I used to chat with Moose at Sacramento's Music Circus every night when I was driving the local "mutt" in from Davis for his brief stint in Act 1.

My mother's step son is going to stop by tomorrow and I'll be curious to see what he has to say.

Her main complaint is her fingers.  She can't get it through her head that they are sprained (and she doesn't know how she sprained them).  The big problem is that the first two fingers on each hand are very sore yet she keeps her hands clasped together, fingers interlocking.  When I give her the old line "It hurts when you do that?  DON'T DO THAT!" she will look very guilty, unlock her hands and then proceed to squeeze finger in order over and over again to see if they still hurt.

I pointed out to her that yesterday, when I tried to clean her up with a wet tissue, the very touch of the tissue, without pressure, caused her to scream out in pain, so she had come a long way in a day.  But of course, she has lost the ability for cause and effect relationships and she didn't pay any attention to what I was saying.

I was drained when I came home.  I don't do anything, really, when I'm there (except today I did a load of dishes that was piled in the sink), but it is such an emotional drain on me that I just want to come home and sit, which Polly can't understand because, dogdammit, it's time for her dinner.  NOW.

I'm going back for tomorrow afternoon.  I have lunch with a friend in the morning and Ed will be there part of the morning anyway.  I'll stay until 6 again, but I think by then I can feel comfortable leaving her alone. given the progress she had made today.

Thursday, June 23, 2016

After the Fall

At 9:30 the phone rang.  The caller ID said it was my mother, but she always calls my cell phone and yes, it was not my mother.  It was someone from Atria calling to let me know she had had a fall.  I said I'd be there in 10 minutes and probably made it in less.

When I got to Atria there were 2 fire engines and an ambulance.  I got to her apartment and there was nobody there, so I went to the front desk, where they said that they had sent her to Kaiser in Vacaville.  When I got outside, the fire engines were gone, but the ambulance was still there so I called out to them and went down there to see if she was inside, which she was.  She was very confused and wasn't sure why she was in the ambulance.  The paramedic asked if she normally knew things like the year and the month and I told him no.

They took off for the hospital and I followed them.

She was in a room in the ER and very confused.  She didn't know why she was there, doesn't remember falling, and is very upset that her fingers hurt.  She also wanted to know what the liquid was that was trickling down her face (blood).

So the questions she wanted asked were:  what happened?  Why do her fingers hurt?  What should she be doing?  Why was she in a hospital?

How many times can she ask those questions in 2-1/2 hours?  Sometimes she understood my answers, sometimes she told me I wasn't making any sense at all and that she was too old to understand.
The funny thing is...the two things she is fixated on under normal circumstances are her watch (comparing the time with the wall clock) and her toenails.  When she can't think of anything to talk about, she asks me if I think her toenails are pretty.

So in the middle of all those questions she was asking, she suddenly noticed that one foot was peeking out from under the hospital gown and she stopped to let me know how pretty her toenails were.

Over the time we were there, she had x-rays on her hands (fingers sprained) and a CT scan to see if she had a concussion (no).  While she was gone, I had a nice conversation with a social service worker and we talked about dementia and alzheimers.  She gave me her phone # in case I have things I want to discuss with her.

When she returned to the ER room, the doctor put 5 stitches in her forehead and then went off to find the scans that had been taken (this took a long time).  Now she wanted to know again why she was there.  When I mentioned the stitches, she asked when she had stitches because she didn't remember that at all.

I was glad I had my cell phone with me and took her picture to show her what her face looked like.  Oddly, she didn't seem to feel a connection between herself and the picture.

Her cut seemed to bleed a lot periodically and I spent a lot of time cleaning blood off of her face.  Also, she was very upset at all the "red" on her hands and she didn't know what it was and however did she get blood on her hands.

She needed to go to the bathroom badly and I went to get the nurse, but my mother looked at me like I was crazy...she didn't need to go to the bathroom.  Five minutes later if she didn't get up to go to the bathroom she was going to "poop all over" but when the nurse came, she didn't know why she was there...she didn't have to go to the bathroom.


Eventually we found that the fingers were just sprained and that the CT scan showed there was no concussion.  A nurse cleaned up her and put a bandage over her stitches.

I knew that I couldn't go off and leave her alone, so I planned to spend the afternoon.  Figuring she would sleep, I stopped by the house here and picked up my Kindle.  It was a good stop because Ned was here and he always brings such sunshine to his visits with his grandma. She stayed in the car and he went out to spend some time with her.

Back at Atria, someone came to explain what actually happened.  Apparently she fell getting out of bed and was bleeding so much she went out into the hall to find help.  She has a pendant to wear, but she has stopped wearing it and even when she wears it, she doesn't know what it is for, so I don't know that it would have helped her.

But they also told me that the day before someone found that she had taken her bed apart and had removed the mattress.  Whoever it was asked if she knew where she was.  She said that yes, she was in San Francisco and was looking for a phone to call her mother.

In the late afternoon, she asked me "where is our mother?"  I said "did you mean where is YOUR mother?"  She said no, where was OUR mother and then snapped back and realized that I was her daughter, not her sister.

I don't know what I will find tomorrow.  I've taken the day off at Logos and will stay at Atria all day just to make sure she's OK.

Monday, June 20, 2016

The Pill Battle

Early in the day, I had stopped by Atria to deliver a gorgeous basket of red carnations I had found at Michael's for my mother.  They look so real and they won't die on her, which is always a plus.  She was unintentionally funny today and though on the one hand it was sad, on the other hand, I couldn't help but laugh at what happened.

I found her sitting in the hall outside the dining room, where the men--fathers and their grown up sons--were stopping by a big bin of bow ties, gift for all the fathers going to lunch.  "I'm getting too old and I don't know what's going on any more," she said, as I explained to her more than once that it was Father's Day and the ties were for all the Dads.

After awhile we went to her apartment.  I had her pills for next week to leave for her and I was fairly certain that if I left her sitting in the hall, she would not remember to take the flowers with her when she went back to her apartment.  And I was right, because even when I reminded her to take them, her reaction was "Oh?  Are those for me?"

We got to the apartment and I went to put her pills in the bathroom, where I always leave them.  I saw that the previous week's pill box still had two days' worth of pills in it.  It had been 3 days since I was last there and when I was there, there were two days' worth of pills not yet taken, so she hasn't been taking her pills.

I confronted her with it (which is always pointless, but somehow I need to do it).  "There are two days worth of pills in there so I know you haven't been taking your pills," I said.

She got defensive and then said "OK...I'll take one NOW."

She got herself a glass of water, and two cookies and went to sit down and dutifully eat her cookies.  I got her pills and handed them to her.  "What are those?" she asked, and then said " I take pills?"

I'm going to have to monitor her more closely to make sure she is taking the pills, which means going to Atria more often.  But I had to admit that I got a good chuckle out of her thinking that she was doing what she was supposed to do by eating two cookies with her glass of water.

Monday, June 13, 2016

Feeling Helpless

To cheer myself up, while Ned painted the shelves for my office, I went to Atria.  I hadn't been there in 3 days and had my mother's clean laundry ready to bring back.

It was the kind of day that I just hate because (a) I feel so helpless, and (b) I don't have a clue what to do.

She was kind of curled into a ball on the couch when I arrived and was asleep.  I sat in a chair and waited for her to wake up, which she did about 10 minutes after I arrived.  She felt terrible and she didn't know why.  There didn't seem to be any pain, but her body just wasn't right.  She said she hadn't eaten, but you can never know if that's true or not because she can't remember if she has eaten as soon as we walk out of the dining room.  Her shoes were near the couch, which I always take as a sign that she has at least been out of the apartment, hopefully for a meal.

She seemed sick to her stomach and tried to vomit several times while I was there, but I don't think she actually brought anything up.  She sat in her chair, looking like a limp dishrag.

I checked her kitchen and saw that she has NO food at all, which isn't surprising.  I decided to go and get food and stock the cupboards so that in case she doesn't feel like going out, she has something to eat.  I went for junk food rather than anything nutritious because I wanted things that would (a) last indefinitely and (b) be appealing to her.  (The first thing I bought was a box of Twinkies since I've heard that there are so many preservatives in Twinkies that they will outlast most humans on the planet),

I also replenished her big jar of cashews, bought the kind of potato chips she likes, the oatmeal cookies she always bought, and some goldfish crackers, and then a package of Hershey Kisses, which she used to have in the house all the time.  None of those things will go bad if she doesn't touch them for a year, but if she is hungry they are there.  Oh, I also bought two tiny cups of Haagen Dazs ice cream for her empty freezer (I am remembering when she had 12 partially eaten ice cream cones in there).

When I got back from the store, she was in worse shape and was again curled on the couch with her hands over her head and moaning.  She would try to sit up and when she put her head back would yelp and dive back to the pillow. I stayed for a long time during which time she sat up again and we started talking.  As before, the more we talked, the better she seemed to feel.

My dilemma is whether to take her to the doctor or not.  If she didn't start sitting up, I would have rushed her off (against her will) to the doctor, but it's Sunday and Kaiser in Davis is not open on Sunday and we would have to drive all the way to Sacramento.  She NEVER wants to go to the doctor and if she feels very sick tells me to wait until she's better and then she will go.  Her childhood years as a Christian Scientist really kick in these days, though she converted to Catholicism more than 50 years go.

I have to work at Sutter tomorrow and I considered not going, but either she will be fine, with no memory of today, or she will still feel bad and grudgingly agree go to the doctor and then sit in the exam room and tell the doctor that she feels fine and she doesn't know why I get so worked up.  Then she'll get back in the car and moan about it all again.

The worst part is that as bad as she does or does not feel, what compounds it exponentially is that she doesn't know what's wrong, she can't figure out what caused it, and she can't make it stop, so obviously she is stupid, stupid, stupid (I lost count of how many times I heard that) because she should be able to diagnose it and control it.  But she's just stupid, stupid, stupid.

This lady had better die in her sleep.  She has never had a serious illness in her life and should she have some sort of organ event that requires hospitalization, she is going to be the world's worst patient.

I'm going to work tomorrow, but will stop by Atria on the way home at 4:30 and see how things are.  I know I will worry all day about her, but she doesn't seem to answer her phone any more and sleeps until noon, so I can't stop by on the way to work either.


Friday, June 10, 2016


After the hour of repetitive conversation with my mother, which always depresses me, we had a major crisis.  When I arrived, her door was ajar, not closed, which surprises me because you have to make an effort to leave it open, since it locks automatically.  

She was worried, as she always is, because there was something she needed to ask me, but couldnt remember what it was.  Then she asked me to check her door because there was something wrong with it.  She said she couldn't get it to close and was afraid someone was going to get angry with her for leaving it open.

I checked the door and it was closed, and told her it seemed fine, which seemed to calm her.  I chalked it up to one of the odd fears she sometimes has.

Toward the end of the visit, I got up to get her laundry to take home and wash and I noticed that her room keys were not on the counter where she keeps them.  I didn't say anything, but started looking around and they were nowhere.  She realized I was looking for something and asked what I was doing.  I told her that her keys were missing.  She immediately got what Walt describes as the "kid caught with her hand in the cookie jar" attitude and told me she knew nothing about it.  She never used the keys. Someone must have put them somewhere.

She helped me look and at one point was standing in the living room saying "I can't even remember which shoes we are looking for."  I am afraid I yelled at her that we weren't looking for shoes, we were looking for keys. She was sitting on the couch with her head in her hands and I felt guilty for letting her know how frustrated I was.

I looked everywhere, but they were nowhere.  I even checked the refrigerator, where Alzheimers patients sometimes put things like keys.  I finally was going to leave her my set of keys when I thought that maybe she had put them in her purse.  Then I couldn't find the purse.  She keeps it in a drawer, but it wasn't there.  I checked all the drawers.  No purse.  I finally checked her closet and in a dark corner the purse was there, as were her keys.  

I took out her checkbook, which I long ago put in her wallet to keep her from losing it (that system has worked well).  In the keys search, I had found her AT&T bill and wrote the check for her to sign, but then found out that the return envelope was not there.  I also went to get the newspaper bill, which I made the mistake of not paying 3 days ago.  It was part of a stack of junk papers that needed to be thrown away but she wouldn't let me touch because she needed to go through it all.  I pulled the bill out and told her NOT to throw that away.  But of course she did.  

The nice thing about dementia is that even when something unpleasant happens, you immediately forget it, so by the time I had written the AT&T check and packed up the laundry to go home, stopping to talk with her about a headline in the newspaper, she had forgotten all the drama of a few minutes ago.  But of course I had not and got into the car still agitated.